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HOUSTON - A local family is sharing their painful journey during this childhood cancer awareness month. Their little girl was only a year old when she was treated for a rare eye cancer, but she's thriving in Kindergarten now! Five-year-old Macy is so happy and well-adjusted you'd never guess all she's been through.
"She finally went to bed, but maybe she only slept like an hour that night, and her eye and face were just very swollen," says Macy's dad, Majid Latif. "Macy was so sleepy she couldn't even stay awake at school, so her parents rushed her to the emergency room. Her condition quickly worsened."
Macy got to the point where the ocular pressure was so heavy that she effectively went into like a brain pressure-induced coma.
"So, she was out for about six days to where she was doing more like IV than actual food," explains Majid.
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Then, they got the scary diagnosis. Little Macy was treated at Texas Children's Cancer Center for retinoblastoma, cancer of the eye that begins in the retina, in the back of the eye.
Pediatric Oncologist Dr. Frank Lin explains the first mission was to calm down swelling.
"So, the surgeons, our ocular oncologists, could remove the eye intact and that's important for us to make sure there's no cancer that escapes the eye wall," says Dr. Lin with Texas Children's Cancer and Hematology Center.
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Surgery was the only treatment needed, yet she is and will be consistently monitored.
"For Macy, it was critical she follow up with our clinical geneticist and then the identification of services that can help her survive and thrive as a child, so even without the add-on of the challenges of chemotherapy and in some cases, radiation therapy, she still had a lot to do and obviously her parents were very involved and did a lot on her behalf and they've made giant strides," says Dr. Lin.
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"Macy's got the genetic variant of her cancer, so it puts her at a substantial risk of developing secondary cancers such as tissue sarcomas and brain tumors later on in life. So, we meet with the oncologist, and as she ages, they start doing scans to look for abnormalities," states Macy's loving mother, Jennifer Villamar-Latif.
A prosthetic eye sure doesn't slow down Macy. She still gets to do all the things she enjoys, like swimming.
Macy's family remains vigilant and proactive in monitoring her health.
"We've tried her best not actually to have her not necessarily be aware. she's aware that she's special and has a different eye, but it's more like trying not to create limitations! So, she goes to swim school. We went snorkeling in Belize earlier this year. So that was really great. So, she's still doing like normal kid's things. We just do a lot of background reading to make sure that when we do, we ask friends. The team here at Texas Children's has always been super helpful so we always ping them and ask them, is this cool or not cool or something special we need to do," says Majid.
Macy is doing great now! She loves to dance, and she's doing well in school. She has been undergoing therapy for the past four years to make sure she can comfortably and safely maneuver in her environment with one eye. Her loving parents are beyond proud of her.
"She's my angel, my hero! I get to watch her learn something new every single day, and I'm there for her. I just love that I get to experience being her mother! I can't imagine her not being in this world. She's the light of the world - she's everything this world needs," says her smiling mom, Jennifer.